Newborn blood spot screening in four countries: stakeholder involvement

While newborn blood spot screening has historically been viewed as a public health success, the potential harms and benefits are more finely balanced for new conditions being considered for program expansion. We highlight complex issues that must be addressed in policy decisions, which in turn requires a consideration of many stakeholder perspectives. Using national policy documents from the United Kingdom, the United States, Australia, and Canada, we describe the participation of stakeholder organizations in the newborn screening policy process, how such organizations have incorporated stakeholder views into their own policy writing, and their recommendations for inclusiveness. Stakeholder participation in newborn screening decision-making is widely acknowledged as important, and many methods have been endorsed - consultation as well as direct or indirect input into policy development. Differences across organizations and jurisdictions raise questions about the most effective approaches for facilitating inclusiveness, suggesting a need for formal evaluative research.